My friend (and I do consider you a friend) Jon suggested this issue of “Care and Feeding.” At first I was resistant. At first, I felt that my childhood was lacking in anything that could be helpful to parents of Autistics. I was raised by religious fundamentalists that felt that what was wrong with me could be solved by nothing more than prayer. Couple that with multiple head traumas, the memory loss associated with severe bipolar disorder and the memory loss from medications from treatment of same… This means that I really don’t remember much of my childhood that could be described as anything other than mental and physical abuse.
Then I thought about it. I mean, I really thought about it and came up with some advice that I believe would have helped my family when I was growing up. Since I have no frame of reference, I can only give the advice that I can extrapolate from my own personal experiences. Hopefully, this will be helpful to any reading this…
1) If something seems wrong with your child, do not ignore it.
My parents thought that the referrals and comments from teachers and other professionals as reactionary. As such, they were unwilling to see that I needed help. They felt that I was just a problem child. At their core, all children – NT and Autistic Spectrum alike want to be accepted, respected and loved. If a child is misbehaving, or seems to be oppositional, there is a reason. Do not let the stigma against mental illness in our culture color your perceptions and cause more harm to your child than good.
2) Learn all that you can about autism.
As of today’s count, about 1 in 91 children has been diagnosed with an Autism Spectrum Disorder (which includes Asperger’s Syndrome. While I believe that ASD is an over-used diagnosis, the fact remains that there are a large number of Autistic diagnoses.
Autism is not contagious. At this point, there is a great deal of speculation as to what causes it, but NO ONE knows what causes it. I can state with almost 100% surety, that it is not yeast, geeks marrying geeks, vaccines, mercury, fluoride in the water or almost any other theory that is out there. You can’t “catch” it. You either have it or you don’t.
Autism Spectrum Disorders are developmental disabilities that will impact a child’s social skills, communication skills and behavior. Most often, Autism is going to be diagnosed during the formative years. What this means is that you need to work with them because diagnosis, treatment and skill training the only way to help a child with autism reach their potential.
It cannot be treated. Medications can help with the symptoms, but that is all. They will not help the child’s condition. THIS IS NOT TO SAY THAT YOUR CHILD SHOULD NOT BE MEDICATED – IF YOUR MENTAL HEALTH PROFESSIONAL STATES THAT IT IS THEIR PROFESSIONAL OPINION THAT THE CHILD BE MEDICATED, TAKE THAT ADVICE UNDER SERIOUS ADVISEMENT. However, the principle purpose and goal of treatment for Autistic Spectrum individuals is to improve their quality of life and their overall ability to function.
Talk to your doctor and read, read, read on the subject.
3) It will be a journey – there is no ONE solution or treatment/education regimen.
Autism Spectrum behaviors WILL change with time. As the child develops and certain areas of the brain become active and develop, their understanding and processing of certain stimuli will change. Another reason for this is the development of coping and functional skillsets being applied.
While children with Autism respond (on the whole) best to a highly structured and specialized environment, what is often forgotten is that that structure must evolve with the child. As such, the treatment plan must be re-evaluated as often as is needed…
Sometimes, this can mean that a treatment plan will be in place for months or years and then suddenly need to be changed. Other times, this means that a treatment plan will need to be updated on a weekly basis.
4) Your child is VERY sensitive to changes in body chemistry, texture, light, sound, taste, and especially the changes caused by medications.
With the high incidents of sensory issues involved with Autistic Spectrum individuals, this can be problematic. (Please reference this entry Aspies and sensory issues for more information) This means that your Autistic child may become oppositional to a situation, food, clothing, medicine or simply the sensations associated with physical maturity. As a parent, it is your responsibility to watch for the telltale signs of a sensory issue. I wish I could tell you what to look for, but each Autistic Spectrum individual’s “tells” are different – one thing to watch for is stimming. If your Autistic child stims – it is a sure sign that something is wrong.
5) A strong social network can be your greatest asset.
Any chronic illness in the family can be an emotional and trying situation. The day-to-day care of Autistic Spectrum individuals can be extremely stressful. A lot of this stress comes from the lack of social and communication skills of the Autistic Spectrum individual and their inability to express their thoughts and feelings adequately.
Further, making sure your child gets the care and treatment that is needed can be a challenge – especially due to the lack of social services and support infrastructure. Add to this the worries about diagnoses, prognosis and well being, the situation can become almost untenable.
A strong social support network can help you out with emotional issues – someone who is a confidant and who will help you survive the failures and rejoice in your victories; Institutional – doctors, teachers, caregivers, therapists that are there to provide information and professional advice; and practical support – neighbors, family members and friends that you can rely on to help you out in an emergency.
6) Teach your FAMILY about autism.
Teach your family about your child’s condition. By family, I mean ALL of the family members that will have contact with you child. It is all too easy for a family member who is ignorant of your Autistic child’s needs can cause mental trauma and cognitive dissonance. Many people will consider this to be an embarrassing thing to talk about. Think about the embarrassment that would be caused by a tantrum or meltdown that could easily have been avoided by a little information.
7) USE CAUTION when considering unproven treatment methods.
As a parent, you want to do what is best for your child. Often, this will mean grasping at ANY proffered cure.
There are many unproven therapies used to treat autism. The safety and effectiveness of these is not known. These therapies and treatments circulate through conspiracy websites, uninformed word of mouth and ignorant media. These treatment options have not bee subjected to scientific study and therefore the validity and safety of the treatment cannot be assured. Even if a friend had a fantastic success using the method suggested, there is no guaranty that it will work for you, or even if it is the treatment that was a result of the treatment in question.
Be cautious of a treatment suggestion if the treatment:
- is based on simplified theories
- promises dramatic results
- sounds too good to be true
- benefits more than a single condition
- is based on anecdotal evidence with no scientific backing
- there are no risks or side effects, therefore no studies are needed
- claims it can CURE autism
- can only be found on websites with no citations. If you cannot track the information, it is wrong.
Some of the unproven therapies are: (the following information was harvested from various sources, including wikipedia)
- a macrobiotic diet. This is predicated on a belief that abnormal yeast colonization is the cause of Autism. Jenny McCarthy claims that her son was Autistic, but a macrobiotic diet cured him. Her son never had Autism.
- Auditory integration training (AIT). Based upon a theory that autism is caused by hearing problems that result in distorted sounds or oversensitivity to noises, this treatment delivers music through special devices.
- Facilitated communication. This method uses a keyboard to assist communication. It has not been found to be helpful and in some cases has been harmful.
- Secretin. This treatment uses an IV injection of secretin (a hormone that stimulates the pancreas and liver) to manage autistic behavior. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between children with autism who received secretin and those who received a placebo.
- Chelationtherapy. Mercury exposure as a cause of autism is the basis for this therapy, which uses medications to help the body eliminate the toxins. Children with autism often have a craving for nonfood items or unusual diets that may result in mercury exposure; therefore, mercury exposure may be more of an effect of autism than a cause.
- Immune globulin therapy. An intravenous (IV) injection of immune globulin is based on the assumption that autism is caused by an autoimmune abnormality.
8) Take time for relaxation.
The best tool you have in your arsenal for dealing with the rigors and difficulties of living with an autistic spectrum child is spending time with them. Take time and schedule downtime… quiet time… not only will your Autistic Child feel more accepted… you will learn more about them and you will alleviate a lot of the problems associated with stress issues and over stimulation.
Images in this issue SHAMELESSLY stolen from the following sources:
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http://diamondstoglass.files.wordpress.com/2012/02/19179346.jpg
http://www.youwall.com/papel/a55aae5bde.jpg
http://eliztalks.com/wp-content/uploads/2011/05/caution_computer.jpg
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